Spincter injury, fistula - support eachother?

[Cyee]

Hi everyone,

Wonderful weather we're having

I am propped up in bed post-hospital and I was wondering if anyone out there knows of, or would enjoy/benefit from, a thread or support site for people who have experienced the above (sphincter damage, fistula etc.) as a result of childbirth.

In my own experience, this whole area is a bit taboo. In fact the consultants reckon there are many women who have some symptoms related to the above, who never seek treatment. The thought of women embarrassed to discuss these matters is awful, yet that seems to be the case.

So - this (while souped up on painkillers) is a call to arms:

• Is there a site out there for women like us?
• If not, would you like there to be?
• Would a thread on MN especially for this, be useful?
• Would it be useful to share experiences with consultants/physios/hospitals/procedures?

If these matters resonate with you or anyone you know, it would be great if you could point them in this direction. I'm going to post in the 'health' and 'childbirth' sections too.

I know too well the taboo around this. I posted on MN when I got my diagnosis and used a different name...

Hope to hear from some people soon.

Cyee
(successfully repaired as of last Wednesday (fingers/legs crossed))

Hi all, havent posted for a while but have been reading this thread. I had a sigmoidoscopy last Saturday (was amazed the appointment was on a saturday, apparently its something to do with meeting their government targets according to my consultant who wasnt to impressed about working overtime!)the procedure itself was OK, wasnt sedated but kept obsessing over something going wrong, apparently if they pierce your bowel you'll need immediate surgery. Asked the consultant what the chances were of that happening and he said in the 18 years he'd been doing them it had happened only once, being the paranoid person that I am I immediately panicked I was going to be the second... This harps back to going into hospital a healthy woman to give birth, only to come out with my arse completely torn to shreds. Luckily everything went OK! Anyhow, apparently everything is 'normal'. Surgeon did say it could be undissolved sutures. Almost cried when he said it as have been told my some doctors it could be sutures while others say impossible, no-one seems to be able to agree. So I still have no diagnois. A followup appointment arrived in the post for a couple of weeks so guess will have to wait til then. Hoping will be referred to a dermatologist to sort out this bloody awful itching out for good (quick recap; have had sore itching bum since my baby was born almost 3 years ago...). Surgeon suggested I try zinc cream so guess I'll be stocking up at the supermarket tomorrow!

Hows everyone else doing today?

Hi all. I started my Cleo Q stimulator today and I could really feel the sensation of it working, so I hope it's goimng to be a great success. I will keep you all up dated on the progress.

Cyee, I was supposed to have that probe thing and they were apparently going to put a catheter on me too...I chickened out tbh and thought I'd try the Cleo first. I can always go back to the 'speciallist nurse' if it doesn't help enough. I've a feeling it will though fingers crossed.

4jen, it does do the work for you, yes. My muscles are so weak that I can't ever do them well enough to make a difference. I can say though, that I've used it just today and I can actually feel that I can pull up my PFM properly! I just thought of trying it again being as we are 'chatting' about it all and it feels so different! I will keep you informed, I promise!

Hi there,

Thanks Solo - thanks for the updates - keep them coming!

DaisyM - great to see you. Glad the procedure was ok (well... you know as ok as poss!!) - but can understand your ongoing frustration about no diagnosis. How has the zinc cream gone down? Any improvement? Keep us posted on your follow-up appointment!

Hope you're all doing well.

Hi all, haven't been on for a while, but have eventually gotton somewhere. Went to see the consultants privately as on the NHS it was taking an eternity and half the time it is the waiting that is really annoying. But anyway am going to be having sphincter and vagina repaired, not sure if that will be privately or if I'll have to wait the 4 months on the nhs. My insurance company are getting back to me, but in general they dont cover birth injuries and therfore are under no obligation (that will teach me to read the small print in the future)to pay for the op. In saying that they have paid for my consultations so that in itself wasn't bad.

As for the posting re PALs, I went down that route and they were really nice. They set up an app with another consultant (not the one who delivered my baby - cause I couldnt face him), who explained what happened. Not sure though if they are telling you the truth or just covering up??!? But it seemed to make some sense, even though they couldnt explain why so much damage was done. It doesnt make me feel any better though.

Anyway hope you are all well and i'll keep you posted..

Hello everyone,
Thanks, Cyee, for starting this discussion. I shouldn't really be joining in here (I'm not a mum) but I chanced across this by accident and have been following it for a long time now and trying to decide whether to join in or not. I'm suffering from similar symptoms but for different reasons. I've had severe endometriosis since the age of 13, which was misdiagnosed for years. By the time I reached my mid 20s, my bowel was so damaged that I lost a lot of sensation and some degree of control, also the ability to digest food properly (I can pass large amounts of gas without even being able to feel it or getting any warning , sorry for tmi). I've been like this for over 2 years now. I had a bowel resection earlier this year and am still recovering, but the problems have not gone away. I've been told it's nerve damage and should probably right itself eventually, but nobody seems able to be very specific or even tell me exactly what is damaged and where. I'm finding it very dificult to cope with and cannot lead a very normal life.
I know I should be posting on the endometriosis fora, but this doesn't seem to be normal for endometriosis (the lists of possible symptoms are always long and never mention it). None of the women posting there seems to have problems like mine, so I thought I might feel more normal on here. Or maybe they are all just like me and just too embarrassed to mention it.
I would love to be able to have children, but am single and don't feel able to go into a relationship while I'm like this.
Anyone want to tell me how their dps cope?
I'm also wondering whether someone who specialises in repairing childbirth injuries might be able to help me - any thoughts on this?
Thanks. Hope you're all recovering well...

Hello last poster, not going to type your name as it wil take too long!

Sorry to hear about your probs and I understand how it isn't really allowing you to enter into a relationship right now. I've only been like this for 3and a half months since I had my baby and it seems like an eternity. My husband is v supportive, i hope if it was role reversal i would be as kind. As for being intimate etc, it's not really happening as I can't really bare to think about it, due to both probs i have. But hopefully somehow I'll get over it eventually.

As for the specialist repairing childbirth injuries - it is a colorectal specialist who looks at the sphincter muscle(which controls the movement of the bowel ie poo and wind) and repairs it, not a gynae specialist. I dont know much about bowel resections, but surely your sphincter must be damaged if you 'lost a lot of sensation and some degree of control' - but i am not a doctor so dont really know. The colorectal specialist and an endoanal scan woiuld show if there was any damage there. Otherwize I havent a clue sorry.

Hope this helps a bit.

Hello DMCT,
thanks for answering, yes that helps.
You can shorten my name to Shouldnt, I don't mind a bit.
I know what you mean about it seeming like an eternity. I have a lot of respect for people who are coping with all this, and have children as well. I feel very sorry for everyone on here - I'm another person who didn't realise these things could happen nowadays, until i read this thread.
I will ask to be referred to a colorectal specialist if this hasn't settled down in 6 months or so - it was a gynae surgeon that did the resectioning.
To all the people who are wondering why they have torn so badly - is it possible that any of you have undiagnosed connective tissue disorders? Try googling 'Ehlers-Danlos syndrome' and 'benign hypermobility syndrome'. I have hypermobility syndrome myself. It is fairly common, often goes undiagnosed and makes people higher risk for all sorts of injuries (bruises, tears, muscle and ligament injuries and dislocations) as the connective tissue in the body is defective.

Hi all and welcome Shouldnt

I think you're going to have to change your name from Shouldnt but not because it's too long but because you should post here!

Firstly, I'm really sorry to hear about all the problems you've been having. Secondly you are absolutely spot on about the connective tissue side. Interestingly my (amazing) physio also suffers from a connective tissue condition hence her interest in the pelvic floor as she has had challenges on this herself, without being linked to childbirth. Have you been to see a physio recently? As well we getting a colorectal consult, I think it's definitely worth geting access to a womens health physio, because your symptoms may partly be worsened by poor pelvic floor tone, especially linked to/perhaps exacerbated by your connective tissue condition. Part of my recovery is regular physio exercises and it's these exercises that are (slowly but surely) giving me increasing amounts of control back. The control of certain types of wind is the aspect that still eludes me a bit though. So I can relate!

I am so so glad you found this thread and glad that it has been relevant to you.

From my side, I've just spent the weekend with a horrific nausea/diarrhoea (sp!!!) bug, so my (newly redesigned for this season) sphincter has been given a good run for its money! The bug was pretty explosive for my hubby too so the good news is that I seem to have some decent tone there now. Hurray!

Take care all and keep posting here Shouldnt/aka Should!

Oh yes, the unexpected fartlets at inopportune times - I did one the other day when I was giving a presentation - I quickly shuffled my papers and tapped them on the table to camouflage the (pretty small but embarrassing) sound!
Hope you're all well. Good to see you here, Ms Should, you're most welcome.

Bluestocking re your 'unexpected fartlets at inopportune times ', I salute your sense of humour and approach towards all this. I dont think I'll ever be able to stand up in front of a room of people again until i know it def wont happen.

Shouldn't- looked up that condition, interesting stuff, makes you think. I'd never heard of it before and all the physios I've been to in the past for various sporting injuries...

Luckily, I haven't had the problems you guys have suffered, but reading this thread brought to mind this article in the Guardian a couple of weeks ago - I don't know if any of you read it...

Bluestocking! PMSL!!!

DMCT - that's v interesting about your physio visits etc... worth exploring perhaps.

Wordsmith - thanks for posting! I read that article and meant to come on here and mention it. Anyone who hasn't read it - read it! I know it's skewed in the sense that consultants only ever see the 'bad' cases. But interesting that even though they know the chance of this sort of damage is small, they'd all opt to avoid it!

The one bit I was a bit worried about was the gloomy prognosis, when most of the consultants we've seen and most of the people who've had the work done, seem ok. Maybe this refers to a very small number of people for whom little can be done??? Not sure. Would welcome other thoughts!

Be well everyone.

Hello Ladies

That is an interesting article, especially the bit about the risk of forceps, why these instruments of torture are still used is a mystery to me, there has to be a better way. My colorectal surgeon told me childbirth is a horrible business better to have a C/S.

Shouldn't, you are welcome here kids or not we are all in the same boat.

Hello everyone,
Thanks for making me welcome - I will stick around, if you don't mind my being here! (I will stay as Shouldnt for just now but if I do end up having children I will change it to Should and post about breastfeeding and playmobile like everybody else. Though I will be quite scared of giving birth after reading all your experiences )

Cyee, I will get another physio referral - hadn't thought of a women's health one. Haven't been for normal physio in ages, as I had a lot of input some years back and things were going well. Hope you've recovered from the bug.

DMCT, it might be worth exploring - there are advantages to having a diagnosis if it is you. Often you need a specialist physio as the wrong type of exercises can make the problems worse, and plenty of non-specialists don't seem to have heard of it and sometimes don't know what they're doing. Before I was diagnosed I remember the doctor looking at me when I described how I got an injury and saying 'well, we'll never really know how you managed to do it'. And I'd be thinking, I just told you how I did it. And I'd get sent for physio and have to describe it all again, and the physio would look at me and say 'well, we'll never really know how you managed to do it'... and then the exercises would make me worse. Things got a lot easier once I knew what I had and got to go to the right people. Also they will sometimes take particular care of you in hospital if they know you've got it - i was lucky with my last anaesthetist, he refused to give me a GA until I'd had a chest x-ray, heart ultrasound and ECG. Probably unnecessary but very reassuring. The only disadvantage is the implications for future health insurance, if that's ever going to be an issue. Connective tissue disorders do seem to carry a slightly increased risk of lots of things, and you can nearly always find an article somewhere saying that women with connective tissue disorders are statistically more likely to have a particular health problem / be knocked down by sewage tankers / eaten by sharks / impregnated by aliens.
Bluestocking, i think you are very brave.
Time i was asleep, goodnight all.

Just found this thread (on MN at this ungodly hour because of pg insomnia after DD woke me up earlier wanting a cuddle - bless). Yes - I'm actually pg again - which after my birth experience with DD is in itself a miracle.

I will post back another time about what happened but thank you so much for starting this thread. For a long time I have thought it was just me. I wouldn't wish this on anyone, but it is somehow comforting to know I'm not the only one who's been through this.

(I won't put the details right now or I'll get so worked up I won't be able to get back to sleep!)

Hi all, and welcome Verso

I hope you got back to sleep ok. When you can and if it isn't too traumatic, come back and tell us how you are and what your experience was. Have you had work done following your DD? I hope your pregnancy is going well!

Good luck with the physio Should(n't)!

Hope you all have a great weekend. I'm off on hols now for a few weeks so take care!

Hi guys and welcome Verso,

Will look into the connective tissue disorder thing once I get the other major problems in my life sorted!!

Went out Wednesday night (Im usually safe enough a night time as long as bowels are def empty) and got very very drunk....
It was one of my husband's collegues leaving parties, beer, coctails, and shots. I am only recovering today. But to tell you the truth it was good to forget and feel somewhat normal again. And thank God i had no accidents.

Enjoy the weekend everyone,

Me again,

Just to let you know I'm going in for the op privately on Wednesday.... keep yer fingers crossed for me.

I wont be able to sit at this pc desk for some time to come.

Chat soon

DMCT - if you read this - good luck!!!!
Hope the hangover is long gone and I hope everything goes well. Try and pen a quickie (standing up?!) to let me know how you got on. Fingers and toes crossed for you!!!!!

Bump.

Hello - anyone there? Everyone ok?

Hi Cyee,

Just got out of hospital today, very very very sore. Apparently op went well, had a few scary moments over the last few days, but Im ok now, TG.

So now it's the pain killers, lactolose, fibrogel and not doing much for a while.

Will mail again soon. Hope all is well with you.

Hello all
I've not been on here for ages but I'm glad this thread is here and when the going gets tough I know you're all here and know exactly what I'm talking about. I'm pregnant again and finding the whole thing a bit of a roller coaster ride. I've had two bouts of bad diarrhoea keeping me house bound and the last one has left me feeling a bit flat. I'm beginning to worry about how my sphincter will bear up as the pregnancy progresses but maybe I'm worrying about something that isn't going to happen. Sorry - I'm not being very articulate here but I tend not to be when I'm worrying about stuff. Sorry for the gloomy post

Hey there,

DMCT - thanks for coming on to let us know how you are. SO pleased the op went well. Did you have the same thing as me, a sphincteroplasty done through your perineum?

The first week was pretty rough for me. Even though I was on the lactulose I was a wee bit slack with it and didn't drink enough water. A couple of times I was doubled over with the pain/discomfort of being blocked up. I kept feeling like I had to 'go' but nothing was happening. I was convinced I'd give myself piles! Anyway, loads of water, high fibre and regular lactulose sorted me out. Hope you do better than me!!!

FiBee - it is great to see you here again. Sorry to hear about the roller coaster ride. Diarrhoea with this sort of injury is really truly horrible and I really feel for you. When are you due again? It's only natural to worry about things, but hopefully your symptoms will be no worse than normal (not great I know!). I haven't read anything that suggested it would get worse, though I can imagine that when you get to the big size, running to the loo isn't as easy as before.

Anyway, I'm rambling (anything to avoid starting work!). Take care everyone and post even if it's just to say you're still there! (am I sounding paranoid?!!!)

Hi there,

Yep, sphincterplasty, but also vagina & perineum reconstruction. Hurts like hell. And on Monday in hospital was constipated (well hadnt gone since the op which was wednesday morning), felt liek going from 6am, but couldnt. Had suppository, hot baths, enima, then senacot and finally went at 8pm. it was as bad as labour!! i thought I was going to die .

Trying to drink a glass of water an hour to keep things going, the lctolose seems to be working now at the mo - well hopefully!!!!

Short post again, sitting isnt an option.